From Toddlers To Teens, Inspired By Others With Lymphatic Malformations

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Last month we returned to Lenox Hill Hospital for Ostin’s second surgery. We had the pleasure of meeting little Nora, who instantly charmed us with her out going personality, adorable smile and abundance of love (blowing kisses to all)! Nora, her mom, Carrie, and grandma joined us in the playroom where we had an opportunity to share “our stories.” Nora is a 16 month old girl who was born with a lymphatic malformation, similar to Ostin’s. It is incredibly comforting to be with children and their families who can relate to your situation, discuss different treatment plans and explain where they are on their journey. Carrie really inspired us with her strong faith, extensive knowledge of this medical condition and great sense of humor! As Carrie describes on her blog,littlelightofminenora.blogspot.com, Nora’s name means “light” and she truly is the light in their loving family.

The month before, we had been sitting in the same playroom, when we had the good fortune of meeting a 16 year old girl, and her father. Her dad inquired about Ostin, wondering what type of diagnosis he had. We knew it was a “safe” environment and he was truly asking out of concern. When I responded, “he has a lymphatic malformation”, he turned to his beautiful daughter, and said, “so does she.” This articulate and poised young lady proceeded to share her experiences in a very factual, easy going manner. She had been born in Mexico and at the time of her birth, her father knew that something was “wrong.” Unfortunately, the doctors denied his insight and no treatment was offered. When she was two years old, the family traveled to the United States where medical care was available, and they settled into their new environment. It’s been a financial struggle for this family of five…the father works two jobs and can only afford health insurance for his children, not for his wife or himself. Yet, he never complained. Receiving medical care for his daughter was his priority, and he knew he was more fortunate than others.

We were grateful they are fluent in Spanish, and left Ostin’s mom, Karla, with them so they could have the opportunity to talk. They learned Karla and Ostin are from Honduras, and living with us while Ostin receives medical treatment. The father told me that Karla has the desire to learn English, and then quietly handed me $50.00, saying, “could you put this towards that?” At first I resisted, but looking in his eyes, I knew this was a gift from his heart.

True example of generosity…the person with the least, offering the most.

Back in NYC for Ostin’s Second Operation

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Yesterday, we arrived at The Ronald McDonald House at 9:30 a.m. to pick up Ostin and Karla. Everyone was familiar with the pre-op routine…no food or drink, and keep Ostin as distracted as possible so he wouldn’t obsess about it. He was admitted to Lenox Hill Hospital and we were sent to the pediatric floor where he was assigned a room and given the freedom to play. Later, the crew from Inside Edition arrived to take some pictures and videos. Ostin was shy at first but then took command of the situation…he hid behind his iPad and filmed all the crew, while greeting each one with “hola!” He thoroughly entertained all of us.

We headed to the pre-op room for consents, questionnaires, and monitoring. The whole process went much more smoothly than last time. Once again, Karla walked Ostin into the O.R., and returned in tears…this is the hardest moment for her. She called her husband in Honduras and was able to update him about the operation. He would then share the news with his family and then their church, where they have been lighting candles and constantly praying.

The operation took about 5 1/2 hours, and the doctors explained it was called “a face lift incision” (a surgical line starting from above his ear to bellow his chin). They were able to successfully remove the lymphatic debris. Preserving the facial nerve was especially difficult due to the lymphatic matter being “cemented” around the nerve. Both surgeons were pleased with the results and explained he will return home with a drainage tube (which will remain for up to 4 weeks), his stitches will be removed in 10 days and he will have another procedure in 4 weeks. Ostin and Karla were settled in for the night.

This morning when we arrived Ostin was in a significant amount of pain but just as defiant in taking any medication. He had already ripped out his IV so they were no longer able to administer it that way. One brilliant nurse injected his medicine into a juice box, and with tremendous amounts of coaxing (and bribing), we were able to get the medicine in. This operation was more extensive, covering a larger area and we expect the recuperation to take longer.

Thank you all for your continued support.